the spin: spring 2014

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SPRING 2014 THE SPIN 1 Engineering Success NEUROPATHIC PAIN NEWS SLEEP APNEA SOLUTIONS SCI & HEART DISEASE SPINAL CORD INJURY BC SPRING 2014 SPINAL CORD INJURY BC thespin Dr. Jaimie Borisoff has some big ideas about how to improve your quality of life through innovation and technology

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The latest innovations in mobility technology, developments in SCI neuropathic pain relief, an in-depth look at sleep apnea, a guide to getting the most out of your taxes, and more.

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Page 1: The Spin: Spring 2014

SPRING 2014 THE SPIN 1

EngineeringSuccess

NEUROPATHIC PAIN NEWS SLEEP APNEA SOLUTIONS SCI & HEART DISEASE

SPINAL CORD INJURY BC SPRING 2014SPINAL CORD INJURY BC

thespinDr. Jaimie Borisoff has some big ideas about how to improve your quality of life through innovation and technology

Page 2: The Spin: Spring 2014

2 THE SPIN SPRING 2014 The Coloplast logo is a registered trademark of Coloplast A/S. © [2014-02] All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark.

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Page 3: The Spin: Spring 2014

SPRING 2014 THE SPIN 3

contentsSPRING 2014

features10 Pain Relief Dr. Riyi Shi is shedding light on the role of a common

neurotoxin in SCI neuropathic pain—and how a safe blood pressure medication could be repurposed to neutralize it.

13 A Taxing Problem It’s that time of the year again. Do you know how to make

the most of the deductions, credits and benefits that are available to you as a person with a disability?

16 Cover Story Dr. Jaimie Borisoff on the evolution of assistive and

mobility technology—and why Robocop isn’t in our future.

20 Sleep Deprivation New research reveals the risk people with SCI are at for

sleep disorders—and suggests how important it is that they be carefully assessed and treated.

26 Working With a steady hand, Greg Rodgerson has rebuilt his

drywall & steel stud business after his 2009 SCI.

28 Knee Jerk Reaction UBC researchers confirm concerns that SCI greatly

increases the risk of heart disease and stroke

departments4 editor’s message White Paper presents a golden opportunity.

6 gear & gadgets New products, devices and aids to daily living that might

make a difference in your life.

8 events Important dates for your calendar.

12 research The changing face of SCI in the United States.

24 ask The Spin doctor The pitfalls of mixing pharmaceutical and recreational drugs.

30 last word A high tech alternative to the ventilator is finally approved

for coverage by Health Canada.

Cover Photo by Candice Vallantin

20

10

6

Spinal Cord Injury BC Online

WATCH the latest in our Accessible Travel Series

youtube.com/SpinalCordInjuryBC

LIKE US to get our latest news and event updates

facebook.com/SpinalCordInjuryBC

FIND, RENT, & SELL accessible housing

AccessibleHousingBC.ca

8

13 26

Page 4: The Spin: Spring 2014

4 THE SPIN SPRING 2014

White Paper: A Golden OpportunityWhat would it take to make BC the most progressive place to live for people with disabilities? The Government of BC wants to know, and they asked for your help to answer the question. Through the Ministry of Social Development and Social Innovation’s Disability White Paper Process, British Columbians have been invited to submit their ideas on how government, businesses and communities can increase accessibility and decrease barriers for people living with disabilities. The consultation phase started in December 2013 and ended on March 11, 2014. It involved community consultation sessions in cities and towns throughout the province, an online discussion forum, and direct submissions to government.

SCI BC contributed to the process in many ways, including as Commun-ity Champions who helped facilitate several community consultation sessions throughout the province. We also submitted our ideas about how to decrease barriers, increase accessibility, and enhance community participation.

Sound underwhelming? Maybe, but a White Paper can be an important founda-tion for changes in government policy and action. How? Wikipedia describes a White Paper as “an authoritative report or guide helping readers to understand an issue, solve a problem, or make a decision.” They are tools for participatory democracy, helping government incorporate public opinion into their policy.

At the outset, it sounded like a bit of stretch to think the process would be a meaningful one. After all, how many times does the disability community need to be consulted before any meaningful changes are implemented?

However, I, along with other members of SCI BC’s staff, were pleasantly sur-prised by the disability community’s willingness to be constructive contributors to the process. Sure, there was some griping at the consultation sessions (how could there not be?) but overall, people were eager to contribute ideas for change.

The catch with all of this that any changes that do result from the process will be those that do not require new money to be thrown into the pot—government has deficit and debt challenges that suggest this will not happen. Instead, chan-ges will see money used more effectively to meet the challenges.

What are those changes? Who knows, but we think there can be wins with respect to easily addressed policies relating to the province-wide adoption ac-cessible housing building codes for all new construction, individualized funding for supports that are more secure and portable, and better options that support independent community living.

It’s naïve to think that the Disability White Paper process will lead to all the changes needed for making BC the most progressive place for people with dis-abilities to live. That would require a massive deconstruction and rebuild of our structures and systems. However, it’s not unreasonable to think that some positive change will arise out of the process. SCI BC will continue to help push for that and so should all British Columbians.

It’s early in the process. The White Paper itself will be developed and there will be a Summit in June during which short, medium, and long-term strategies and action plans will be developed. Sound like a lot of talk? Yes. But at least there is talk, and at least it has involved talk from the disability community. Now, the key question is: has there been enough listening?

– Chris McBride, Executive Director, SCI BC

thespinThe Spin is the quarterly magazine of Spinal Cord Injury BC. An online edition of The Spin is available on the SCI BC website www.sci-bc.ca.

Executive Editor .................................................... Chris McBrideManaging Editor ...................................................... Cliff BridgesAssistant Editor ................................................Candice VallantinDesign ..................................................................... Cliff BridgesContributors ....................Maureen Brownlee, Fernando Romero

SUBSCRIPTIONSFree subscriptions are available for BC residents and health professionals:T: 604.324.3611 TF: 1.877.324.3611 E: [email protected]

ADVERTISINGAdvertising rates and a publishing calendar for The Spin are available online at www.sci-bc.ca, or by contacting:Gary Steeves E: [email protected] T: 604.326.1210

SUBMISSIONS Submissions, suggestions and comments are greatly appreciated—please email these to [email protected] or send by regular mail to:Assistant Editor, The SpinSpinal Cord Injury BC, 780 SW Marine DriveVancouver, British Columbia V6P 5Y7

COPYRIGHTYou are welcome to reproduce material from The Spin after gaining permission from the Executive Editor. All reproduced material must be appropriately acknowledged.

The opinions expressed in The Spin are not necessarily those of SCI BC. Also, SCI BC does not endorse nor is responsible for the products or services advertised within The Spin. The information contained within The Spin is presented for the purpose of educating people about spinal cord injury. Nothing contained in The Spin is intended to be used for medical diagnosis or treatment. It should not be used in place of the advice of your physician or other qualified health care provider.

Publications Mail Agreement #: 40684573ISSN #: 1922-9445

Return undeliverable Canadian addresses to:Spinal Cord Injury BC, 780 SW Marine DriveVancouver, British Columbia V6P 5Y7 T: 604.324.3611

To update/change delivery address, email [email protected] or call 604.324.3611.

SCI BC HEAD OFFICE780 SW Marine Drive, Vancouver, British Columbia V6P 5Y7T: 604.324.3611 TF: 1.877.324.3611 F: 604.326.1229 E: [email protected]

REGIONAL PEER CONTACTSFort St. John: Lori Slater, Peer Program CoordinatorT: 250.787.1912 E: [email protected]

Kelowna: James Hektner, Peer Program CoordinatorE: [email protected]

Nanaimo: Bert Abbott, Peer Program CoordinatorT: 250.616.1186 E: [email protected]

Prince George: Brandy Stiles, Peer Program Regional LeaderT: 250.563.6942 E: [email protected]

Quesnel: Lynn Dunkley/Alison Duddy, Volunteer Peer Program Coordinators E: [email protected]

Vancouver: Kirsten Sharp, Peer Program SpecialistT: 604.326.1259 E: [email protected] Peter, Peer Program CoordinatorT: 604.326.1230 E: [email protected]

Vernon: Sonja Gaudet, Peer Program CoordinatorE: [email protected]

Victoria: Scott Heron, Peer Program CoordinatorT: 250.812.0773 E: [email protected]

Williams Lake: Sandra Stuart, Volunteer Peer Program [email protected]

SCI BC acknowledges the financial support of the BC Gaming Commission, the Rick Hansen Institute, and the BC Paraplegic Foundation.

SCI BC Info Line: 1.800.689.2477

editor’s message n

MBrownlee
Sticky Note
remove Lynn Dunkley (she retired) so just Alison Duddy - and title should become singular
Page 5: The Spin: Spring 2014

SPRING 2014 THE SPIN 5

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REAR ENTRYSidewinder has a long, proud history of manufacturing lowered floor, rear access conversions on the Dodge Grand Caravan, Chrysler Town and Country, and the Volkswagen Routan.

Open the great outdoors with doors that open wide.

Sidewinder Conversions and SCI-BC would like to congratulate Ken and John Labron for their induction into the National Mobil-ity Equipment Dealers Association Hall of Fame. The Labron family has been helping people with mobility issues for 45 years and John continues to do so at Sidewinder. For everyone you have helped and befriended, we thank you for your continued service and we congratulate both of you for this most deserving award.

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Page 6: The Spin: Spring 2014

6 THE SPIN SPRING 2014

PDG ELEVATIONThe Elevation wheelchair, designed by Vancou-

ver’s Dr. Jaimie Borisoff, uses a unique hydraulic

system to elevate users for better interaction or

reaching ability. Borisoff, a Paralympian basket-

ball player and SCI researcher, spent four years

designing and researching Elevation. Recently,

Vancouver’s PDG Mobility completed its purchase

of the Elevation technology, and the chair is now

commercially available. You can learn more about

it at www.pdgmobility.com. You can also read more about Borisoff and his views about

the role technology can play in improving life for people with SCI on page 16.

MOBILITY MOUNTAfter he was injured in a 1995 workplace

accident, SCI-BC board member Gerry

Price began creating wheelchair mounts

for various purposes. His latest product

is the Mobility Mount, which uses an

under-seat base constructed from ano-

dized aluminum, which is connected to

a multi-table with a nonslip surface that

holds whatever you need held, including

your iPad or other tablet. The system can

also hold a camera mount, an umbrella,

a shopping basket, and fishing rod hold-

ers. For more information on the Mobility

Mount and other wheelchair mounts and

holders, visit www.mobilitymount.com.

WHILL TYPE-ADesigned by a Japanese team of former Sony, Toyota, and Olym-

pus engineers, the Whill Type-A is a fresh take on the power

wheelchair. The startup company based its design on interviews

of 150 American wheelchair users, concluding that they wanted

stability, nimbleness, and a less-clinical look. The finished product

allows users to sit in different positions—for example, one position

allows users to look and feel like they’re riding a motorcycle. Spe-

cial front wheels that incorporate rollers give the chair an impressive 28 inch turning radius,

while still allowing it to navigate rough terrain. Atsushi Mizushima, Whill’s director of business

development, says he hopes the Whill Type-A will ultimately be “the iPhone of mobility devices.”

The chair will be available in the USA later this year. Visit www.whill.jp for more details.

InnovationsNew products, devices & aids to daily living that might make a difference in your life...

CONVERTASTEPConvertaStep is an incline wheelchair lift that offers an easy, instant, construction-free ramp

alternative for any raised entrance, inside or out. Constructed of heavy, weather-coated steel,

the ConvertaStep can smoothly lift wheelchair and user up to 350 kilograms. It comes in three

sizes to offer an adjustable height range from 11 to 33 inches. The highest model lifts to 33

inches in less than 15 seconds, and moves the user forward to span from one to five standard

steps. It’s 31 inches wide, and can therefore accommodate most manual and power chairs.

The lift is inconspicuous and can be painted to blend easily with any home decor. Each unit

comes with two remote controls, and runs on a 12 volt battery which is maintained through

a charger which plugs into a standard 110 volt outlet. This American-made product is sold

in Canada by Wolfe Mobility—visit www.wolfemobility.ca for more information.

n gear & gadgets

6 THE SPIN SPRING 2014

Page 7: The Spin: Spring 2014

SPRING 2014 THE SPIN 7

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Page 8: The Spin: Spring 2014

8 THE SPIN SPRING 2014

events n

Walk ‘n Roll with us.Join SCI BC’s Walk ‘n Rollers on June 22 for our third annual Scotiabank Char-ity Challenge. We were selected to be a Featured Charity this year, and we need you to help us make an impression! Whether you want to walk, run or roll in a manual or a power chair, we’re ex-cited to have you and your friends and family join our team. Contact Kirsten at [email protected] or 604.326.1259 if you’d like to walk or roll for our cause.

Fashion statement.Three of our peer members will wheel down the catwalk on April 24 at the Riv-er Rock Casino in Richmond during the graduation show of Kwantlen Polytech-nic University’s fashion design program. Designer Kaylyn MacKenzie is dedicated to making functional and beautiful adapt-ive apparel, and our peers are excited to present her work to the world. Contact Kirsten for details: [email protected] or 604.326.1259.

World-class rugby.From June 19 to the 21, the world’s best wheelchair rugby players will compete in the 2014 International Wheelchair Rugby Canada Cup at Richmond’s Olympic Oval. The top ten teams in the world will vie for top honours, including defending Canada Cup champion USA. Spinal Cord Injury BC usually has a few extra tickets on hand, so get in touch if you would like to attend. Visit www.canadacupwcrugby.com for details.

Disability Parking: Some Perks You Might Not Know AboutIf you have a valid disability parking permit, you’re obviously well

within your rights to use disabled parking stalls at shopping centres,

and a variety of public buildings and facilities. But did you know

that the City of Vancouver has other parking benefits for people

displaying a valid parking decal?

For example, you can park for three

hours for free at parking marked “Resident

Permit Parking” or “Resident Parking Only”

even if you don’t have a residential parking

permit.

Also, with a valid permit, you can park

in City of Vancouver designated disabled

parking zones, and accessible parking meter spots.

You can also park for 30 minutes while actively loading or un-

loading people or materials in regular loading zones, passenger

zones, and no parking zones.

The Social Planning and Research Council of BC (SPARC BC)

issues parking permits for people with disabilities who are residents

of BC. To learn more about applying for a permit and what it entitles

you to, please visit www.sparc.bc.ca.

For more information about Vancouver’s exemptions for valid

disability parking permit holders, visit www.vancouver.ca/streets-

transportation/accessible-parking.aspx. And if you don’t live in

Vancouver, contact your local city hall see if your community has

any such exemptions.

Meanwhile, we know that abuse of designated parking spots

for people with disabilities continues to

be a hot issue. SPARC BC is working

on the problem, and has set up a new

hotline that you can call to report viola-

tions in Vancouver and throughout BC.

The hotline number is 604.718.7734.

When you report a violation, SPARC BC

will in turn contact the appropriate au-

thorities and attempt to have the violator ticketed.

One final note: remember that tourists visiting our province

can use their legally-issued handicapped parking permits while

in BC. Tourists are encouraged, however, to carry proper docu-

mentation to verify ownership of a parking permit, since they

vary from country to country and aren’t always recognizable.

There’s a great alternative for visitors who want to avoid any

problems. SPARC BC issues temporary parking permits for vis-

itors with disabilities. For details, visit the SPARC BC website at

www.sparc.bc.ca, call 604.718.7733, or email [email protected].

Page 9: The Spin: Spring 2014

SPRING 2014 THE SPIN 9

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Page 10: The Spin: Spring 2014

10 THE SPIN SPRING 2014

n research

pain reliefR

egular readers of The Spin know that we like to write about pain. Life with any type of level of SCI is no picnic, but to have severe neuropathic pain as a constant companion to paralysis, as is the case for many of our readers, just seems like

a gross injustice. That’s why we’re always on the lookout for promising research in this area.

Late last year, we learned about some fascinating results from a decade-old research effort led by Dr. Riyi Shi, a pro-fessor of neuroscience and biomedical engineering in Purdue University’s Department of Basic Medical Sciences, School of Veterinary Medicine and Weldon School of Biomedical Engin-eering. The results were published in the November 29th issue of the Journal of Neurochemistry.

The essence of Shi’s work is that a well-known neurotoxin called acrolein appears to be one of the culprits behind the

Purdue University researcher

Dr. Riyi Shi is shedding light on

the role of a common neurotoxin

in SCI neuropathic pain—and

how a safe and effective blood

pressure medication could be

repurposed to neutralize it.

Page 11: The Spin: Spring 2014

SPRING 2014 THE SPIN 11

pain relief

often excruciating neuropathic pain that many people with SCI live with. Addi-tionally, and perhaps more importantly, a drug already approved by the FDA neutralizes this neurotoxin, reduces the neuropathic pain, and is therefore a po-tential treatment.

A word of caution: as with a great deal of SCI research, this body of work has been conducted only in animal studies. But it’s still promising, and because the drug involved is already being used suc-cessfully and safely for other conditions, it may be possible to move it quickly into human clinical studies for a neuropathic pain application.

So what is acrolein? It’s a highly toxic compound that can be found all around us in the environment, and also inside of us. For example, it’s produced when many foods such as vegetable oils and animals fats are heated, and it’s also in cigarette smoke and vehicle exhaust. In-dustrially, it’s actually produced in large quantities, often for use as a herbicide to control water-based weeds and algae.

Scientists have also known for some time that acrolein is produced inside the body as the result of a process called oxidative stress.

We couldn’t live without oxygen—our bodies combine it with the food we digest to essentially power vital life functions. But where there is oxygen, there is also the possibility of oxidation. When you see rusting iron, for example, you’re actually viewing oxidation in ac-tion—the process by which free oxygen radicals “steal” electrons from the iron atoms and damage them in the process. This process also occurs in our bodies throughout our lifetime—it’s one reason why we age. Inside our bodies, we refer to this process as oxidative stress.

Oxidative stress is largely kept in check in a healthy person by anti-oxidants. But it can be accelerated by elevated levels of free radicals. When this happens, it can have devastating results. Research to date implicates

oxidative stress as a contributing factor in more than 70 well-known diseases, including heart disease, cancer, Parkin-son’s, diabetes, and Alzheimer’s. And there’s long been an acknowledgement that elevated levels of oxidative stress in-crease the severity of an SCI in the days and weeks that follow the initial trauma, which leads us to Shi’s research.

“It’s well known that oxidative stress and free radicals are important patho-logical mechanisms related to SCI,” says Shi. “However, strategies aimed at reducing free radicals alone have only demonstrated marginal benefits. This is why we were motivated to identify more important targets for therapies in oxida-tive stress.”

Shi and his team knew that acrolein was produced by a specific type of oxida-tive stress known as lipid peroxidation. Lipids are molecules that our bodies use for a variety of purposes, including forming cell membranes. During lipid peroxidation, free radicals “steal” elec-trons from lipids in cell membranes. Not only does this cause damage to the cells, it results in the production of acrolein.

They also knew that trauma to nerve cells has been demonstrated to trig-ger lipid peroxidation, and, in turn, produce acrolein. And they recognized that acrolein causes a chain reaction of

biochemical events thought to worsen the injury’s severity, perpetuate the oxi-dative stress, and produce even more acrolein—truly a vicious biochemical circle. Therefore, they set their sights on better understanding the role of acrolein in SCI.

In a series of experiments with rats, they confirmed that the quantity of acrolein present in the body increases by an astonishing 300 percent immedi-ately following SCI. But they discovered much more.

“It turns out that acrolein is a very im-portant compound behind neuropathic pain,” Shi says.

Their findings suggest that the in-creased levels of acrolein bind to and activate pain receptors called TRPA1, which are contained in pain-sensory nerve fibers of dorsal root ganglia lo-cated alongside the spine. In fact, the elevated levels of acrolein after SCI resulted in a three-fold increase in the number of TRPA1 channels.

“The amplification of pain can be ex-acerbated in SCI due to acrolein’s direct activation of pain receptors, as well as acrolein-induced inflammation that fur-ther intensifies pain sensation,” Shi says. “Sometimes you have pain even without stimulation. You can have excruciating pain just sitting there.”

SPRING 2014 THE SPIN 11

LEFT: Dr. Riyi Shi at work in his laboratory (photo courtesy of Purdue University). BELOW: A conceptual drawing showing the molecular structure of the neurotoxin acrolein.

Page 12: The Spin: Spring 2014

12 THE SPIN SPRING 2014

With new evidence that acrolein is at least in part responsible for neuropathic pain following SCI, Shi and his team then moved on to finding some way of limiting it after injury. They focused on hydrala-zine, a drug that was already known to be an “acrolein scavenger.”

“The reason we tried hydralazine is be-cause other scientists have already shown it could bind and neutralize acrolein, par-ticularly in liver cells,” Shi explains. “It turned out to work very well.”

Shi’s work with hydralazine involved measuring a treated rat’s reaction to stimulation, and demonstrated a sig-nificant reduction in neuropathic pain that corresponded with the reduction in acrolein. And there’s more—they also dis-covered that hydralazine treatment also resulted in significant reduction of post-SCI tissue damage and motor deficits.

All of this might sound like hydralazine is effective only in the short period of time after injury—the acute phase of in-jury. But Shi says it also has promise as a treatment for neuropathic pain in people who have been injured for some time.

“Even if we delay administration of hydralazine we can still reduce the pain, meaning not only acute but chronic pain might be reduced by acrolein-scavenging treatment,” Shi says. “In addition to the elevated acrolein level immediately fol-lowing SCI, the expression (activity) of the TRPA1 is elevated long after the in-jury. This means that the sensory neurons remain sensitive to acrolein. So acrolein may produce neuropathic pain even after the acrolein level is normalized. There-fore, it’s likely that acrolein can not only contribute to pain in acute SCI, but also to chronic pain in SCI long after the acute stage. One piece of evidence to support this is the very fact that, in our animal experiments, treatment with hydralaz-ine not only reduced pain in the acute stage post-SCI, but also in sub-acute and chronic stages post-SCI.”

All of this leads us to ask, “So what is hydralazine?” It’s a drug known as a “smooth muscle relaxant” that has long been approved by the U.S. Food and Drug Administration to treat high blood

pressure, or hypertension. In this role, it works by relaxing blood vessels so blood can flow through the body more easily. Its ability to “scavenge” acrolein has been known for some time, but it’s only recently that studies like Shi’s are find-ing specific applications for this ability.

“We are making efforts to push hydrala-zine to the clinical usage,” says Shi. “It is FDA approved, so there is a history of several decades of safety data regarding hydralazine. Meanwhile, the dosage to lower acrolein is at least a magnitude lower than that needed for reducing blood pressure, making it safe to use in SCI. Since it is FDA approved, this will be a repurposing drug, just like aspirin was repurposed from a pain medication to a blood thinner. So we could likely skip phase I trials to test safety, and go dir-ectly to phase II clinical trials, to see if it is effective in humans. This would sig-nificantly expedite the approval process.”

As for side effects of hydralazine, the most concerning is hypotension, or a dangerous drop in blood pressure.

“However,” says Shi, “since the dosage to scavenge acrolein would be lower than that used for hypertension, the risk of hypotension will be minimal. In addi-tion, in the animal studies, the dosage at which hydralazine could effectively lower acrolein did not cause any signifi-cant hypotension.”

Interestingly, we did find someone in a popular online SCI consumer forum who claims to have recently started taking hydralazine for neuropathic pain. When we told Shi that, he understandably ex-pressed concern.

“At this point, I need to make it clear that hydralazine has not been approved for SCI or as an analgesic medication,” he cautions.

Shi is also researching the role of acrolein in multiple sclerosis, where he believes it is one of the agents respon-sible for the breakdown of myelin, the protective sheath found around neurons. Watch future issues of The Spin for de-velopments about hydralazine and Shi’s research as they become available. n

The Changing Face of SCIThe number of serious traumatic spinal cord injuries is on the rise in the USA, and the

leading cause no longer appears to be motor vehicle crashes, but falls.

That’s the verdict from a recent Johns Hopkins research report, recently published

in the Journal of Neurotrauma.

The same research also confirms a trend seen here in Canada that the average age

of people when injured is quickly rising, with more and more seniors acquiring SCIs.

“We have demonstrated how costly traumatic spinal cord injury is and how lethal

and disabling it can be among older people,” says Shalini Selvarajah, M.D., M.P.H., a

postdoctoral surgical research fellow at the Johns Hopkins University School of Medicine

and leader of the study. “It’s an area that is ripe for prevention.”

The researchers analyzed a nationally representative sample of 43,137 adults treated

in hospital emergency rooms for SCI in the United States between 2007 and 2009. While

the incidence among those aged 18 to 64 dropped from 52.3 per million in 2007 to 49.9

per million in 2009, the incidence per million in those 65 and older increased from 79.4

in 2007 to 87.7 in 2009.

At 41.5 percent, falls were the leading cause of injury over the three-year study period,

followed by motor vehicle crashes at 35.5 percent.

The average age of adults at time of injury of adults is now 51. A study that covered

the years 2000 to 2005 was 41.

While the researchers say they can’t pinpoint the exact reason that falls have sur-

passed car crashes as a cause of traumatic SCI, they believe it may be a combination

of the general aging of the population, the more active lifestyles of many Americans over

65, and airbags and seatbelt laws that allow drivers and passengers to survive crashes.

Page 13: The Spin: Spring 2014

SPRING 2014 THE SPIN 13

I’ve been an accountant for almost two decades. During that time, I’ve prepared hundreds—even thou-sands—of returns for clients, many who have an SCI. I also happen to have an SCI. As a result, I’m pretty

comfortable with how Canadian tax law relates to people with SCI and other disabilities.

In the past, I’ve offered tax tips to SCI BC members and peers in Paragraphic, the predecessor of The Spin. But it’s been a while since we’ve done that. Laws have changed; The Spin has many new readers. So we decided to prepare something for this issue—some disability-focused tax tips that will inspire you to maximize your 2013 personal tax return, which is due on April 30th. I know it’s hard for anyone but an accountant to get excited about tax sea-son, but there are strategies that you should get enthused about—strategies that can save you and your family a lot of money if you’re not presently taking advantage of them.

What follows is my top ten tax tips. Note that these are not technical tips, nor are they in-depth instructions. In other words, you won’t see a comprehensive list of which medical expenses qualify, or what line of your return to plug your disability tax credit into. Instead, these are gen-

eral, practical tips—important, overarching knowledge that you need to be up to speed on before you prepare your return, or before you see a professional about preparing your return.

1Everything starts with your applica-tion for the Disability Tax Credit (DTC). If you’re a person with an SCI or a related permanent disability, you absolutely need to get your doctor to fill out form T2201, the

Disability Tax Credit Certificate, and have it submitted to the Canada Revenue Agency (CRA). As a person with an SCI, having your T2201 approved by CRA is a foregone conclusion. Once you’ve been approved, you can apply for the actual Disability Tax Credit (more on that below). But maybe you’re thinking, “I have no income, so I don’t need to apply for the DTC.” Wrong! You may be able to transfer your DTC to someone else. Not only that, having your T2201 approved is really important for more than just applying for the DTC. It qualifies you for other govern-ment benefits, the most important being the Registered Disability Savings Plan (RDSP), and some of the major

A Taxing

Problem

money n

It’s that time of the year again. Do you know how to make the most of the deductions, credits and benefits that are available to you as a person with a disability? – by Walter Gagen

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14 THE SPIN SPRING 2014

medical expenses such as attendant care. Again, more on this in the points that follow below.

2Once your T2201 is approved, claim the DTC. Simply put, the DTC reduces the amount of in-come tax you have to pay. The bottom line savings can be up to approximately $1,600 per year. If you have little or no income and can’t make use

of the DTC yourself, it may be possible to transfer it to a spouse or a relative who is providing care or financial support. And if you’ve been injured for some time, and somehow have never clued into the DTC, take heart—you can apply for the credit retroactively, potentially going back up to 10 years (see 9 on the next page).

3Claim Allowable Medical Expenses. This is a major section of potential deductions that may be available to people with SCI or their caregivers. For people with SCI, there are many allowable medical expenses—expenses for products and

services prescribed by a doctor that you’ve paid for out of pocket, above and beyond what’s been provided to you by gov-ernment programs or private insurance. The most important of these is probably attendant care—if you paid any amount to someone other than your spouse to help you with your daily care, you can probably claim what you paid as an Allowable Medical Expense. Once again, an approved T2201 is necessary to claim attendant care expenses.

4Be aware of other possible benefits, credits and deductions. In addition to the two biggies I’ve mentioned above, there are other credits or deductions that you might be able to take ad-vantage of. Some of the most important ones are

listed below, but keep in mind there are others. For more in-formation on all of these, visit the CRA website.• The Caregiver Amount (Caregiver Tax Credit). A commonly

missed tax credit is the Caregiver Amount or Caregiver Tax Credit. If, at any time in the year, you were a dependant of someone who maintained a dwelling where you both lived, that person may be able to claim this credit, resulting in savings of up to $600.

• Family Caregiver Amount Tax Credit: If the person who received the Caregiver Tax Credit above is your spouse, part-ner or other family member, and provided any type of care to you, he or she may be able qualify for this credit, resulting in additional bottom line savings of up to $300.

• Disability Supports Deductions: If you pay for supports to en-able you to perform the duties of an employee, business owner or student, you may be able to claim them on your taxes.

• Working Income Tax Benefit (Disability Supplement): If you qualify for the DTC, are employed or own a business, and earn between $1,150 and $19,867, you may qualify.

5Don’t delay—open a Registered Disability Savings Plan. This is just too good of a deal to pass up. First of all, the government will match any contributions you make by up to 300 percent, to a maximum of $3,500. Can’t afford to make a

contribution? It doesn’t matter—open an RDSP anyhow, be-cause, depending on your family income, the government may give you the Canada Disability Savings Bond of $1,000 a year regardless of whether or not you make personal contributions. In addition, you can carry forward unused government grants and bonds as far back as 2008. So if you qualify for the bond and have for some years, simply opening an RDSP in 2014 will get you up to $7,000. What are you (or your financial advisor) waiting for?

6Be informed. A quick Google search will yield a ton of hits and a lot of great information, but I suggest going straight to the horse’s mouth—CRA itself. Gone are the days that CRA spoke in the kind of gibberish that only accountants could

understand. CRA’s guide for people with disabilities, available online or in printed form which CRA will mail to you, is excel-lent. It contains every possible nugget of information that CRA has on the benefits and credits you may be able to access as a person with SCI. Not only that, it’s written in plainspeak and shows just how far CRA has come in this regard. Here’s the direct link: www.cra-arc.gc.ca/E/pub/tg/rc4064/README.html.

“Are you one of the thousands of Canadians with a disability who have given the government thousands—and maybe millions—of dollars in taxes unnecessarily?” asks Walter Gagen. “If so, don’t despair.”

gagen photo

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SPRING 2014 THE SPIN 15

7Get help if you think you need it. While Can-ada’s tax benefits for people with disabilities are, for the most part, pretty impressive, wading through every step to maximize your return can be difficult. A professional might be able to save

you both money and grief in the long run. Even for those who are determined to DYI their taxes, seeing a professional to help with the first return after the onset of disability might make it a lot easier for you to be self-sufficient in years to come.

8Be organized and accurate. Take your yearly tax return seriously. Never submit incomplete or incorrect information. Even though you don’t have to submit receipts for medical expenses when e-filing, you can be asked for them at any

time—so make sure you have them in an organized, safe place.

9Get back taxes that you should never have paid. Recently, a prominent Ottawa accountant who works with many people with disabilities estimated that only about 50% of people who are entitled to the Disability Tax Credit and the

Caregiver Tax Credit are actually claiming it. Are you one of the thousands of Canadians with a disability who have given the government thousands—and maybe millions—of dollars in taxes unnecessarily? If so, don’t despair. You can claim the

DTC from this year onward and potentially for up to 10 years in the past, under the Taxpayer Relief provisions. In addition, caregivers can also claim back as far as 2002 for the Care-giver Tax Credit. The result could be a windfall tax refund of $10,000 or more.

10Get your gas rebate. My final tip isn’t really an income tax tip, but if you qualify for BC’s Fuel Tax Refund Program for People with Disabilities, tax season is a great time to get your

annual rebate application submitted. Basically, if you’re a person with an SCI, and use a vehicle, you can apply to this program and receive a rebate of up to $500 per year for all the tax you paid as part of your annual fuel expenses. And if you qualify for this benefit, you may be eligible for other dis-counts—for example, insurance (check with your insurance agent). A great starting place to learn more about this is the SCI BC website’s SCI Information Database—visit www.sci-bc-database.ca and search for “gas tax rebate”.

Good luck! n

Walter Gagen is a Vancouver-based SCI BC peer and an ac-countant. For more information about Walter, the services he provides, and how to contact him, visit www.gagen.ca.

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technology n

Dr. Jaimie Borisoff on the evolution of assistive and mobility technology—and why Robocop isn’t in our future.

EngineeringBetter Living Through

16 THE SPIN SPRING 2014

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Update us on the Elevation wheel-chair. How is it different?One area of my lab at ICORD and at BCIT is really thinking about equipment and technology for people with disabil-ities and impacting quality of life, health, function and that sort of thing.

This wheelchair was designed so that you can change your position throughout your day at any time, to suit whatever activity you want to do. You can change your seat height so you can have a lower centre of gravity and a better wheeling position to get around your community, or you can sit a bit higher at a desk or at a table, and you can also sit even higher if you want to reach a shelf, interact with people at eye level, or do whatever it is that you might want to do.

You can also change your backrest position easily to match your activities and maintain your comfort. For instance, if you move it forward, you’ll find it eas-ier to wheel up hills or ramps. You can also make it recline so it’s easier and safer to go down ramps.

It’s very quiet and simple. It’s all mechanical. That’s the key to the design. The goal was to make it very simple and natural to use. You have to have some hand or arm function or enough to move yourself. You have to put a bit of strength into it—it’s not going to do it all for you.

What’s next for the Elevation?It’s now owned by PDG, which is quite exiting as PDG is a successful Vancouver-based wheelchair manufacturer. I also have an ongoing role with PDG, help-ing to direct their expansion into high performance products. The Elevation is now available commercially in Canada. It’s not yet being heavily marketed in some provinces, where coverage isn’t yet in place. But we are pursuing this, and we’re also going through the FDA approval process for USA sales.

With the Elevation now complete and commercially available, what are you working on these days? One area that I’m really excited about right now is exercise equipment. What we have downstairs (in the Blusson Spin-al Cord Centre) is the Physical Activity Research Centre (PARC). The Centre has adaptive equipment, and volunteers are available to help anyone, regardless of disability, learn to use that equipment.

One of the things I’m doing with my grad student, Jacqueline Cragg, is looking at the major issues in SCI that cause poor health and reduced life spans. People with SCI typically don’t live as long or stay as healthy as some-one without it, and one of the reasons is cardiovascular health and fitness.

It’s hard for someone with SCI to stay fit and healthy, so we’re taking a closer look at the benefits of regular use of arm and leg bikes. In particular, we’ve found that moving your legs passively in con-junction with your arms can be hugely beneficial with a very simple piece of equipment. We just did a case study with ICORD’s Dr. Chris West about this, which we’ll hopefully publish soon.

This is ongoing work taking place in several labs, but it’s becoming clear that moving your legs—even passively—is beneficial to spasticity, circulation, cardiovascular health, maybe even bowel and bladder function, and a whole host of other things.

If you’re using your legs while stand-ing with exoskeletons, that might even improve your body composition, weight loss, and bone density. So yes, that whole area is very fascinating.

What do you think are some of the challenges faced by people with physical disabilities that can be solved through engineering?When I think about the challenges we face, I’m not thinking in terms of finding a cure. I’m more interested in terms of quality of life with SCI, and having the fullest and healthiest life you can lead, for the longest you can live. It’s more about participating in the community and the activities of daily living.

This sort of technology can definitely have an impact. We hope it can have an impact on general health with exercise equipment. With better wheelchairs you can have better participation in the com-munity—you can get anywhere you want, and do the activities you want, wherever it is that you want to do them. That’s where technology can have a big impact.

Why did you decide so early in your career to focus on quality of life as opposed to finding a cure? Life isn’t so bad. We’re pretty lucky where we are. Spinal Cord Injury BC is a great example: there are some people who are living some pretty good lives regardless of their level of injury. We

Jaimie Borisoff doesn’t just solve problems, he does it with panache. When he and his wife had their first child, he added a gas spring and pivot to the front wall of the crib. The wall would then smoothly open up and out “like the door of a Lamborghini” to provide Borisoff with easy access to his son.

The husband and father of two is also a Paralympic wheelchair basketball cham-pion, and he plays ball hockey on his off time. But Borisoff doesn’t want to talk about any of that. Instead, he prefers to speak about innovation and how technology can enhance his own quality of life, and that of others with SCI.

And he has the credentials to do just that. Borisoff is the Research Director and the Canadian Research Chair of Rehabilitation Engineering Design at the British Columbia Institute of Technology (BCIT). He’s also a Principal Investigator at ICORD, and Adjunct Professor at the University of British Columbia. This is a man who has a wealth of big ideas to talk about.

Recently, Borisoff completed the sale of his revolutionary Elevation wheelchair to PDG Mobility Technologies, which is now marketing and selling it. Borisoff sat down with The Spin to discuss the Elevation, his current work, and the exciting develop-ments in his field of rehabilitation engineering.

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have a pretty good commun-ity in that we don’t dwell on the fact that we do have a spinal cord in-jury, we’re just busy doing stuff that’s enjoyable and interesting.

At the same time, just as someone who rides bikes might want a better bicycle, someone who uses a wheelchair might want a better wheelchair. I’ve never really thought about it in any other way.

Tell me about some of the big tech-nologies that have a lot of hype right now in this field, and what you think is overrated. I think exoskeletons are a bit of both. If we think of equipment and technology for SCI, this is going to be one of the major pieces of technology we will con-tinue to hear about that’s coming downthe pipeline in the future.

ICORD just bought one, which you might have seen on the news recently. It’s a state-of-the-art walking exoskel-eton that’s available commercially for clinical and research use only.

Exoskeletons are overhyped because the media and the public see this as a mobility device. They see people up and walking in them and think, “That’s awe-some!” But in reality it’s not a mobility device; it’s only a therapeutic device.

It’s not a mobility device because it’s very, very slow. It takes a very long time to get from A to B so mobility is actually hampered, not enhanced. It’s very diffi-cult to get in and out of it. It hasn’t been shown to be safe in the community at all. If you talk to the companies making exo-skeletons, they’ll say these are designed specifically for inside use in institutions right now, under supervision. They ac-knowledge that it’s not a mobility device at this point. Of course, they want to get to that, so maybe we should throw some money at it because it could evolve into a mobility device over the years—maybe.

At this point it’s certainly a therapeut-ic device, in that exoskeletons can help you get standing and walking your legs passively. It’s very expensive, however.

So that’s what I’m interested in right now—comparing cost to effectiveness. I’m interested in the impact of exoskel-etons, but I also want to know if there’s something that’s more accessible, say like an elliptical machine, which is a thou-sand dollar device that anyone can buy for their own home. We haven’t shown that these machines have the same bene-fits as an exoskeleton, but potentially they might have similar effects as well as exercising cardiovascular health - really two birds with one stone so to speak.

That’s the path that’s happening right now, so it might be overhyped, but it’s still very exciting and interesting.

Are you hopeful that one day exo-skeletons will be a mobility device that is practical and accessible to individuals? I didn’t talk about this earlier, but it’s something we considered with the Eleva-tion wheelchair: dynamic natural motion,the concept of moving dynamically andquickly in real time to suit you, much likean able-bodied person would sit, squat, stand, or whatever as required. So if we think of an exoskeleton as a mobility device in the future, the ultimate mani-festation would mean you could sit, stand,walk, et cetera, and that would be takingdynamic natural motion to the next level.

We wrote a concept paper on this, about putting an exoskeleton on wheels. I can think of it as a device that you would wake up in the morning and hop into it, transferring like you would into your wheelchair. Wheelchairs support daily life really well right now. So the question is, can we make the exoskeleton into a device like a wheelchair, so that when you want to, you could stand and walk?

I envision this as an exoskeleton that has wheels attached to it, and when you want to, you put the straps on and stand and go for a walk, leaving the wheels behind. So that’s how we’re thinking about making a mobility device and an

exoskeleton come together. You need wheels because you just

can’t beat wheels for mobility; that’s why we drive cars, that’s why we ride bikes. A wheelchair is not going to go away any time soon, because it’s an easy and ef-ficient way to get around.

But there are all these great benefits to standing and walking. Should those benefits come from a different device? If I have to go to my closet to get my exoskeleton out and get into it, I would argue that these things won’t be used to their capabilities very well.

So your vision is of us being Rob-ocop or something like that?Well, hopefully not with the sound. That would be distracting. That’s what would limit the device—some people would say that it’s ridiculous, look at all that ma-chinery you’re strapped to, look at the sound that it makes. It’s cool that I can get up and walk, and maybe I’ll use it a couple times for novelty’s sake or for special occasions, but no one wants to feel, look or sound like Robocop.

Like a bionic man, then? Yes, but if you do want to feel like a bionic man, you want to do it with the least in-trusion possible. Like with a wheelchair, you don’t want it to be a beacon that says, “Hey, I’m in a wheelchair over here!” You want it to be elegant; you want the focus to be on the person and not on the device that a person has to be using.

So how long does it take for a device like this to come into exist-ence? In our lifetime?Sure—that’s pretty broad.

What if I give you a crystal ball? Well, if you look at the exoskeletons we have right now, it’s very sophisticated technology. They have the best batter-ies, computers, the best of everything. Now look at electric cars, and how far they have come recently. I think it’s just the tip of the iceberg. I think we have a long way to go. Ultimately I think these things take a long, long time. n

“It’s cool that I can get up

and walk...but no one wants

to feel, look or sound like

Robocop.”

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SPRING 2014 THE SPIN 19

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Sleep DeprivationNew research reveals just how much at risk people with SCI are for sleep disorders—and, given the serious health implications, suggests how important it is that they be carefully assessed and treated.

health n

Over the past two decades, there’s been a smatter-ing of research efforts that concluded people with SCI are at risk for sleep apnea and other sleep disorders. But most of these have just scratched

the surface of the problem, and answers have been scarce when it comes to details about the prevalence and types of sleep disorders experienced by people with SCI—and more importantly, what can be done about them.

Dr. Abdulghani Sankari, a physician scientist at De-troit’s John D. Dingell VA Medical Center and Wayne State University School of Medicine, has been working on an-swering those questions for the past four years.

“I became interested in studying sleep and breathing disorders in SCI during my pulmonary fellowship and as I was completing my PhD in physiology of sleep and breath-

ing in 2009,” says Sankari. “I noticed that patients with SCI have very little information on why they have poor sleep and quality of life. I met with my research mentor, Dr. Safwan Badr, and decided to focus my career develop-ment and research investigation on this challenging area to understand the mechanism of disease and explore other options for treatments.”

Sankari and his team recently completed two lengthy research projects that provide a much more robust under-standing of the problems.

The first study used a battery of tests and question-naires to compare sleep-disordered breathing in people with quadriplegia against people with paraplegia—a com-parison that hasn’t ever been attempted.

“We studied 26 consecutive people—15 quadriplegics,

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SPRING 2014 THE SPIN 21

and 11 paraplegics—who have lived with chronic SCI for more than a year,” ex-plains Sankari. “We found that nearly everyone we studied had poor sleep quality. More importantly, we found that 77 percent had confirmed breath-ing disorders during sleep—sleep apnea or sleep disordered breathing.”

Perhaps the most revealing result of the study was the significant difference in the prevalence and type of sleep dis-orders Sankari and his colleagues found in people with quadriplegia versus those with paraplegia.

“We were very surprised to find that sleep apnea prevalence is much greater in those who have injury at the neck level—more than 90 percent—versus those at the high back, or thoracic level, which was around 50 percent,” says Sankari.

He adds that the nature of sleep disor-ders in people with SCI is complex, with a high occurrence of both obstructive and central sleep apnea. And the oc-currence of central sleep apnea, which requires special consideration in diagno-sis and treatment, was more common in quadriplegics than paraplegics.

The results of that study appeared in the Jan. 15 issue of the Journal of Clinical Sleep Medicine, published by the Amer-ican Academy of Sleep Medicine.

In the second project, Sankari and his team delved deeper in an attempt to understand if quadriplegia has a differ-ent effect on breathing during sleep than

paraplegia—and how both compare to non-disabled people.

“In this study, we looked at 32 subjects—eight quadriplegics, eight para-plegics, and 16 non-disabled people,” says Sankari. “We were surprised to find a striking difference in the tendency to stop breathing due to faulty signal from the brain—central apnea—in the quadri-plegic group, compared to the paraplegic

group, which acted similar to the non-in-jured participants.”

Specifically, Sankari and his team found that 63 percent of participants with quadriplegia had central sleep apnea, compared to only 13 percent of patients with paraplegia. They also found that the quadriplegic partici-pants with central apnea required less carbon dioxide in their blood to trigger a bout, compared to paraplegics. And the efficiency of the respiratory system in quadriplegic participants was lower, with shallower breathing, than those with paraplegia.

Results of this study appeared in the October 2013 issue of the Journal of Ap-plied Physiology.

Sleep apnea: just what exactly is it, anyhow?Sleep apnea is the most common and the most serious of sleep disorders. People

with sleep apnea stop breathing during their sleep, sometimes hundreds of times.

The result is that the brain and the rest of the body may not get enough oxygen

during sleep. This can lead to sleep deprivation and, more importantly, many serious

health risks.

There are two types of sleep apnea: obstructive sleep apnea, or OSA; and central

sleep apnea, or CSA. OSA, which is far more common in the general population, is

caused by a blockage of the airway, usually when the soft tissue in the back of the

throat collapses during sleep. With CSA, the brain fails to signal the muscles to breathe

due to a compromise in the respiratory control centre.

A person can also experience a combination of OSA—this is sometimes called

complex sleep apnea.

Sleep apnea can affect anyone at any age, but those at higher risk are men who

are over 40; are overweight; have a large neck, tonsils or tongue; have a family his-

tory of sleep apnea; and have nasal congestion from a deviated septum or allergies.

Additionally, the new research outlined in this feature suggests that people with SCI

are at higher risk than others.

Treatments can range from simple weight loss to dental appliances that elimin-

ate the obstruction and machines that increase air pressure in the throat so that the

airway doesn’t collapse.

If left untreated, sleep apnea can result poor performance in daily activities, motor

vehicle crashes, high blood pressure, stroke, heart failure, diabetes, depression, and

even death.

“We were surprised to find a striking differ-ence in the tendency to stop breathing due to faulty signal from the brain—central ap-nea—in the quadriplegic group, compared to the paraplegic group, which acted similar to the non-injured participants.” says Dr. Ab-dulghani Sankari.

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Sankari says that both studies have important implications for people living with SCI.

“First, as we learned from the first study, the majority of people with SCI have poor sleep quality and sleep disor-ders that can be missed if not evaluated early on in a specialized centre such as in-lab sleep study clinics,” he says. “The second study gives us a better under-standing of the causes of disease and targets for new therapies. Specifically, the second study showed that injuries in the neck level have a greater tendency to stop breathing and develop unstable breathing immediately after falling asleep. In turn, these trigger a cascade of events of dropping oxygen levels and multiple awakenings. Using therapeut-ic measures can alleviate this chain of events, using mechanical treatments such as positive airway pressure with or without oxygen and possibly drugs that

stimulate and stabilize breathing via ac-tions on the central nervous system.”

Sankari’s message to those of you who think you’re not sleeping well is to stop procrastinating and get assessed for a sleep disorder, because there’s a lot more at stake than simply being tired and sleepy every day.

“There’s strong evidence that links sleep disordered breathing to higher rate of mortality and morbidity from cardiovascular disease and stroke,” he says. “People with SCI are more vulner-able to these adverse consequences, as many of them have respiratory disorders and weak respiratory muscles. In addi-tion, many people with SCI suffer from autonomic and cardiovascular disorders related to their injury. These, combined with very poor sleep and frequent drops in oxygen levels at night, lead to a per-fect storm that can affect directly the lives of many people with SCI.”

And, while new treatments are being studied (including two new drug ther-apies by Sankari and his team), Sankari says the best option remains CPAP (short for continuous positive airway pressure) or, in the case of central apnea, BiPAP—the bi refers to bilevel airway pressure. Unfortunately, he concedes that even after his patients with SCI know their diagnosis and the implications of not using one of these machines, they often do just that.

“Nearly two thirds of SCI patients who were identified to have sleep apnea did not start treatment despite formal notification. A few subjects stopped the mechanical treatment due to intolerance or interference with their quality of life, and one subject refused any treatment for his severe sleep apnea—he died within a year. We are assessing these barriers more systematically to identify respon-sible factors for these observations.” n

For some people with obstructive sleep apnea, wearing a CPAP

mask nightly is a hard sell. A new technique, Inspire Upper Airway

Stimulation (UAS) therapy, might be one solution.

The device is surgically

implanted. It has three com-

ponents: a stimulation electrode

placed on the hypoglossal nerve

that stimulates the muscles

of the tongue; a sensing lead

placed between rib muscles

to detect breathing effort, and

a neurostimulator implanted in

the upper right chest. When the

sensing lead detects abnormal

breathing effort during sleep,

it signals for stimulation of the

nerve of the tongue, thereby

enlarging and stabilizing the

airway and improving control of

breathing.

Results of a multi-centre trial

of the therapy involving 126

people with moderate to severe OSA were recently published in

the New England Journal of Medicine. After one year, participants

using the device had an approximately 70 percent reduction in

sleep apnea severity, as well as significant reductions in

daytime sleepiness.

“While CPAP is a successful treatment when used on a

regular basis, as many as half

of the patients who have been

prescribed CPAP are unable to

use it regularly, largely due to

discomfort with the mask and/

or the lack of desire to be teth-

ered to a machine,” says lead

author Dr. Patrick Strollo, pro-

fessor of medicine and clinical

and translational science at the

University of Pittsburgh School

of Medicine. “The results of this

trial show a huge potential for

a new and effective treatment

that can help millions of pa-

tients.”

“My short-term memory has

improved significantly, and the

surgery has made a huge dif-

ference in my quality of life,” reports Kathy Gaberson, one

of the study participants who used the Inspire therapy. “My

apnea episodes went from 23 times an hour to just two.”

Upper Airway Stimulation Offers an Alternative to CPAP

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SPRING 2014 THE SPIN 23

Ken Legros, C5 – C6 complete, Prince George I’ve been in a wheelchair for 27 years due to a car accident back in

August 10, 1986. I was told by family members that I was snoring very

loudly, and that I stopped breathing when that happens.

I was assessed back in 2006 by VitalAire—the outcome wasn’t very

good, as I stopped breathing for three

minutes several times. I was then set

up with a CPAP machine that I wear

every night.

The treatment has been a suc-

cess, as I sleep though the night and

wake up feeling rested. Prior to that,

I woke up several times per the night

from the snoring and shallow breath-

ing. My quality of life has improved

90 percent—it helped with weight loss, and I’m no longer sleepy or

lacking energy during the day.

The only difficulty was getting used to having a mask on your face,

but after a while you get used to it. I recommend getting treated as it

will improve your day-to-day living and result in way better sleeps.”

Dave Dawson, C7 incomplete, VancouverFor several years, I hadn’t been sleeping well at night and had been

experiencing extreme bouts of fatigue during the day. I would gen-

erally wake up with a headache every morning. I didn’t really think

anything of these symptoms until last February when I started having

difficulty breathing and shortness of breath in the daytime. This got

worse over a period of several months until I began waking startled

in the middle of the night with shortness of breath.

One morning in May I

was having such difficulty

breathing that we called

an ambulance. When

the paramedics arrived

my oxygen levels were

so low that they actually

thought their equipment

was malfunctioning—my

body was getting so little

oxygen I should not have

been conscious.

At the hospital I was

diagnosed with severe

pneumonia—and sleep

apnea, which had contributed to development of the pneumonia. I

was assessed in hospital with various BiPAP machines. When I was

stabilized, the hospital referred me to a lung specialist, along with

a company to provide me with my own BiPAP machine to be used

at home. The company’s staff came to our home to set me up, and

train my wife and care aids.

These days, I now sleep much more soundly. I no longer wake up

or have any bouts of fatigue during the day. I also no longer wake up

with headaches every morning. In fact, I now really can’t even sleep

without the BiPAP machine.

The only difficult for me personally is that I am unable to take the

mask on and off myself due to limited hand functionality. The other

downside is if we’re travelling, we have to be sure to take the machine

with us. However, it’s quite small and compact—about the size of a

shoebox. We have adapted pretty easily considering we usually need

so many other medical aids when travelling anyway!

If you’re experiencing any difficulty sleeping at night, headaches

in the morning or extreme bouts of fatigue during the day, please

don’t hesitate to see your doctor and inquire about the possibility

of apnea—if I had done this sooner I would not have ended up with

severe life threatening pneumonia.

Dean Stone, C7 – T1, VancouverIn the mid 90s I found I was constantly feeling very fatigued. I was

sent to the sleep clinic in Richmond Hospital to do an overnight study,

and I was assessed as having sleep apnea.

I tried a CPAP machine for about a week, and didn’t like it at all. I

had better success with a custom dental appliance that moves the

lower jaw forward a bit which keeps the airway open (like when CPR

is performed).

I began to feel more energetic in the day and my quality of life im-

proved. I wore it for several years. After losing quite a bit of weight, it

seemed like the apnea had subsided so I stopped wearing it.

In 2007, while I was in GF Strong after my accident, my roommate

threw a pillow at me one night to wake me up because I wasn’t

breathing. I did a few more tests, which showed my apnea had

returned with a vengeance—I would stop breathing about 400 to

500 times per night. I got fitted for another dental appliance, which

brought down the episodes to about 50 or 60 per night. I have been

wearing it since.

It takes a bit of getting used to, but it’s not uncomfortable and not

hard to stick to the treatment once you get used to it. The bottom line

is that getting a good quality sleep at night is especially important to

those of us with SCI.

Sleep Apnea: Three Success Stories from SCI BC Peers

SPRING 2014 THE SPIN 23

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24 THE SPIN SPRING 2014

“It seems like I haven’t had a good night’s sleep

since my injury. My wife says my snoring is intoler-

able, and that I sometimes seem to stop breathing

while asleep,” writes John in Surrey. “Is it possible

I have sleep apnea? What should I do about it?”

To answer this issue’s question, we turned to

Dr. Jeremy Road, a Professor of Medicine at UBC,

Respirologist at Vancouver Hospital and UBC, and

Medical Director of the Provincial Respiratory Out-

reach Program and the Vancouver Hospital Lung

Function Laboratory.

It is possible that you have some form of sleep apnea. It’s a potentially serious condition, so you shouldn’t delay in seeking answers. Your first step is to speak to your family

physician, who will in turn refer you to a specialist qualified to diagnose and treat respiratory sleep disorders including sleep apnea. Your referral to the specialist will include an overnight stay in a hospital or sleep clinic, where you’ll be assessed for sleep apnea using polysomnography, a test that electronically transmits and records specific physical activities while you sleep.

Your “sleepover” will be conducted in a natural, comfort-able setting, and a mild sleeping pill may be provided to you to ensure you sleep well during the testing.

If you’re diagnosed with sleep apnea, the goal of treat-ment is to restore natural breathing throughout the night, resulting in a return of daytime energy and alertness. The treatment that is prescribed to you will depend on what type of sleep apnea is involved.

If you’re diagnosed with obstructive sleep apnea (OSA), and you’re overweight, losing some of that weight can sometimes be enough to reduce apnea. As part of your body’s weight reduction, elimination of excess adipose tis-sue around the upper airway makes it that much easier to breathe while you’re asleep. Avoidance of medications and drugs—including alcohol—that relax the muscles in the upper airway can also be a simple solution. Failing that, an oral appliance custom-made by a specialist dentist can often reduce or eliminate mild to moderate OSA—these devices move the lower jaw forward during sleep, which prevents the tongue from falling into the airway. However, the standby treatment for more severe cases of OSA re-mains CPAP, or continuous positive airway pressure. With CPAP, a soft mask is worn during sleep, with positive air pressure delivered by a small, quiet machine.

You may also be diagnosed with central sleep apnea (CSA), or a combination of CSA and OSA. As emerging re-search is demonstrating, people with quadriplegia are at

ask the SPIN DOCTORan increased risk for this type of apnea. There really is only one reliable treatment option for CSA, or a combination of CSA and OSA, and that’s BiPAP, a trademarked abbrevia-tion for bilevel positive airway pressure. Like CPAP, BiPAP involves a mask and a machine to maintain air pressure. The “bilevel” com-ponent refers to the fact that there are in two alternating pressures—higher pressure when you breathe in, and slightly lower pressure that allows you breathe out.

There are some existing surgical options, but these are considered in unusual circumstances, since success rates are not high.

You may be wondering who pays for all of this. Here in BC, the entire sleep apnea assessment process is paid for via your standard BC Health coverage. Unfortunately, treat-ment is a different matter—there is no BC Health coverage for any type of treatment. Sleep disorder specialists in BC are working together to change this—for example, we have prepared a study which points out that providing treatment coverage is less expensive than the combined cost of motor vehicle collisions, workplace accidents and serious health complications associated with untreated sleep apnea.

For the moment, you’ll have to bear the cost of treatment by yourself. We urge you not to let this get in the way of getting assessed and, if you’re diagnosed with sleep apnea, finding out your personal risks that may result from failing to have it treated.

Sleep apnea treatment options in-clude an oral appliance (right) and a CPAP system (below).

photo courtesy Airway Management

photo courtesy Fisher & Paykel

Page 25: The Spin: Spring 2014

SPRING 2014 THE SPIN 25

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Page 26: The Spin: Spring 2014

26 THE SPIN SPRING 2014

working n

rebuildingVancouver’s Greg Rodgerson is thriving after his injury, and so is his drywall & steel stud business.

26 THE SPIN SPRING 2014

Page 27: The Spin: Spring 2014

SPRING 2014 THE SPIN 27

Over the years, we’ve seen firsthand proof that the sky’s the limit when it comes to ca-reers for people with SCI.

Ingenuity and perseverance—two traits that many of our readers seem to have in abundance—have led them down some professional paths that are both fascinating and stereotype-challenging.

Even so, we were intrigued when we learned about Greg Rodgerson and his business, Rufus Enterprises Ltd.—a Van-couver-based commercial drywall and steel stud contracting outfit. We caught up to Rodgerson at his company’s latest project at the historic Beth Israel Syna-gogue on Oak Street and 27th Avenue. Inside, we found him supervising his crew (who affectionately referred to him as “Boss”), hard at work installing steel studs and drywall as part of a complete remodel of the synagogue.

“I began the business in 1984 as a way to simplify taxes and legitimize my em-ployment,” says Rodgerson, who got into the trade after finishing high school. “I started out doing warehouse improve-ments, and moved on to retail stores in malls. Slowly, we built a reputation for being able to complete jobs efficiently and with quality.”

Like all contractors, Rodgerson’s com-pany has had its share of ups and downs over the years as dictated by the econ-omy. In the summer of 2011, business was finally looking up after some tough years. “We were involved in a hotel tow-er conversion, consisting of two 18 story towers being converted to residential rental units,” recalls Rodgerson. “We had over 30 people employed at the time.”

And that’s when disaster struck. “I was riding a motorcycle on the Coquihalla, and hit some gravel,” says Rodgerson. “I drifted into the centre grass median and hit a rut. The next thing I knew, I was flipping through the air, and I landed with the bike on top of me.”

Fortunately, an off-duty paramedic was one of the first people at the crash scene, arriving about a minute after the crash. Within another minute, a doctor stopped and took over Rodgerson’s care. Within

half an hour, Rodgerson was airlifted to Vancouver General Hospital. There, he was diagnosed with a C7 – C8 SCI. But, perhaps thanks in part to the rapid re-sponse of knowledgeable bystanders and the rapid air ambulance, he was left with full upper body mobility and strength.

In the blink of an eye, Rodgerson had to not only face life as a wheelchair user, but the daunting challenge of keeping a huge job on track and his company afloat.

“Being in the middle of the pro-ject, there was no room for doubt, as I stood to lose everything,” he says. “The hardest part at the beginning was com-munications. I was unable to do anything for over a month. I was finally able to get a laptop and start dealing with the backlog of paperwork. I mentally had ac-cepted the new reality of my injury from the moment it occurred—I knew I would not walk again, and accepted it as a fact. That allowed me to move forward with the important stuff, dealing with the fall-out within the company.”

As he healed, he began using his lap-top more and more to access his home computer, answer emails, estimate ex-tras, and even land a couple of new jobs. “During the time in the hospital,” he says, “I had terrific support from every-one working for me.”

That support, along with his own perseverance, saw him steadily regain his health and independ-ence, while keeping the job on track and his com-pany viable. It’s truly been a case of “what doesn’t kill you makes you strong-er,” and Rodgerson says his company is now in a healthy position.

“We now do both com-mercial and residential projects, ranging from warehouses to residential tower projects. We’re still recovering, but we’ve seen a large spike in growth through the last year. I would say that, today, Rufus Enterprises is a successful and growing company, with eight to 12 full-time staff at any given time.”

While Rodgerson isn’t able to put the tools on anymore, he figures that’s prob-ably for the best—it allows him to stay focused on estimating, acquiring new work, solving technical issues on the job, and working out logistics.

As for the attitude of the general con-tractors who hire him, there’s never been a problem. “All my clients accept my condition, after they realize that I’m extremely knowledgeable about my trade. Most just treat me just like any other contractor they may meet. I believe that our reputation is what’s growing the company, and I don’t think having an SCI is a hindrance. In fact, I think in some small way, my clients re-spect me more, as I’m navigating the job sites in my wheelchair.”

We asked Rodgerson what advice he would give someone who wants to get into—or back into—the building trades after an SCI.

“Well, there is life after an SCI,” he says. “Estimation is a big part of the building trades, as well as scheduling, bookkeeping, billing, and day-to-day paperwork. You can’t realistically put the tools back on, but you can do sup-port and management work. Estimating courses are a good initial path, as well as basic accounting.”

Finally, we asked Rodgerson if he wanted to give anyone a shout-out for

helping him and his com-pany get back on track in his post-injury life.

“I have to thank Shelley Moore and JoAnne Herd for the support they gave me through the transition from legs to no legs,” he says. “I would not be where I am without their support. I would also say the support I received from Haebler Con-struction was instrumental

to the growth of Rufus Enterprises, by seeing past my disability and accepting me as a person.” n

For more information: Rufus Enterprises Ltd., 604.936.6384

Page 28: The Spin: Spring 2014

28 THE SPIN SPRING 2014

High Risk

research n

Researchers at the University of British Columbia confirm concerns that SCI greatly increases the risk of heart disease and stroke

It’s a tough pill to swallow. But here at SCI BC, we definitely think it’s a case of “better the devil you know than the devil you don’t know.”

A UBC study led by graduate student Jacque-lyn Cragg concludes that the risk of heart disease for people with SCI is nearly three times that of non-disabled people. Not only that, their risk of stroke is almost four times greater.

And, while respiratory diseases such as pneumonia still rank high, cardiovascular disease—CVD for short—is now the leading cause of death among individuals with SCI, according to Cragg.

In the past, a handful of studies shed light on the types of risk factors for CVD common in people with SCI. But those studies were by studying small groups of people with SCI, and they didn’t even attempt to determine the magnitude of the risk—in other words, how likely it is that individuals with SCI will experience CVD.

When Cragg, along with colleagues Dr. Andrei Kras-sioukov, Dr. Jaimie Borisoff, and Dr. Vanessa Noonan,

were presented with a unique opportunity to determine the magnitude of risk by examining a huge slice of the Canadian population, they jumped at the chance.

“Actually, this was somewhat of an unusual study in that we obtained ethics to obtain data from Statistics Canada,” says Cragg. “Statistics Canada runs regular cycles of the Canadian Community Health Survey, and we were thrilled to find out that the 2010 cycle had data on both SCI and CVD.”

Once they had obtained the necessary clearances, the team studied health data from more than 60,000 people who participated in the 2010 Canadian Community Health Survey. Of those, 354 people reported having both an SCI and a stroke, and 356 people reported having an SCI and cardiovascular disease.

The study was completed over the past year. Cragg performed the statistical analyses, while all the team mem-bers were involved in the study design and interpretation of the results, which were published in the August 20, 2013 issue of the journal Neurology.

Page 29: The Spin: Spring 2014

SPRING 2014 THE SPIN 29

“The most significant finding was the increased risk of heart disease and stroke seen among individuals with SCI,” says Cragg. “We were not surprised at the findings regarding the ele-vated risk, but we were surprised at the magnitude of the risk.”

To put the numbers into perspective, the risk of CVD for people with SCI is similar to that of non-disabled people who smoke, have diabetes, or are obese.

There are some limitations to the study. Of these, the most significant is that the results are from cross-sectional data. “We cannot, for example, be certain if the SCI came before the CVD,” says Cragg. “However, our estimates of risk for stroke were remarkably similar to those from a Taiwanese study—this study did have confirmation that the SCI came before the CVD. Another limitation of the data is that there was not detailed neurological information (about each individual), as the data were derived from a general population health survey. We know there are a lot of differences among individuals with SCI which will affect CVD risk.”

And, to be clear, the study does not attempt to determine causes for the higher risk. But there are many established, “conventional” risks for CVD in people with SCI. And there is an ever-increasing body of evidence that implicates non-conventional factors such as poor autonomic function as a risk for CVD.

“We know that physical inactivity as a result of SCI contrib-utes to the risk, and so do the results of physical inactivity, such as abnormal glycemic control (the ability to control spikes in blood glucose), dyslipidemia (high amounts of cholesterol and fat in the blood), and obesity,” says Cragg. “In addition, there may be other risk factors, including cardiac and vascu-lar dysfunction, and other autonomic disturbances relating to regulation of blood pressure—for example, orthostatic hypo-tension and autonomic dysreflexia. However, understanding the contributors to risk and the relationships between these contributors is something we are currently examining.”

In other words, like most good science, the study raises many more questions than it answers. The essence of this was captured nicely in an Neurology editorial written about

the study. “Despite the accumulating evidence on the associa-tions between CVD and SCI, there is a lack of evidence-based research to guide clinicians in managing CVD risk factors in patients with SCI...It is not surprising that few currently avail-able guidelines address the management of CVD risk factors in patients with SCI and practically all of them are based on ex-pert opinion or results from studies carried out in able-bodied individuals,” wrote Dr. Elena Kuklina and Dr. Ellen Merete Hagen. “Although the results of the study by Cragg et al. take us one step closer to understanding the unique profile of CVD risk in patients with SCI, they are also a timely call for more research to address CVD in this population.” n

What Can You Do to Lower the Risk?

What should people with SCI take away from this study? What

are steps they can take today to lower their risk?

In terms of the traditional or conventional risk factors, lead

author Jacquelyn Cragg says there’s plenty people can do.

“Although we still know only about the tip of the iceberg

on the association between the conventional risk factors and

CVD after SCI, it’s generally recommended that each individual

with SCI should do his or her best to prevent development of

CVD,” says Cragg. “Follow guidelines for exercise after SCI,

maintain a healthy diet, quit smoking, follow up with your MD

on a regular basis, and if needed, stick to any medications your

MD deems necessary to maintain good cardiovascular health.”

As for the non-traditional risk factors which are emerging,

such as the role of autonomic dysreflexia (AD), Cragg says

that working with your health care professionals to achieve

the best possible autonomic function is a worthy goal. And

so is taking all possible precautions to avoid AD episodes.

Finally, she says that cardiovascular health is something

you should be discussing with your healthcare providers regu-

larly throughout your post-injury life. “We absolutely agree

that CV health should be assessed regularly,” she says. “ We

hope that this study does put cardiovascular health on the

radar for general practitioners and physiatrists.”

Here at SCI BC, we also believe that people with SCI—

particularly those living in rural BC—need to advocate for

themselves and ensure their physicians are aware of the re-

sults of this study.

Jacquelyn Cragg

Page 30: The Spin: Spring 2014

30 THE SPIN SPRING 2014

last word n

Breathe EasierAfter years of testing, the NeuRx Diaphragm Pacing System has finally received Health Canada approval for coverage

Here’s some good news for venti-lator-dependent quadriplegics who have been hoping for a life-changing opportunity to use the

NeuRx Diaphragm Pacing System (DPS). In December, Health Canada provided full approval for the system, which is built by USA-based Synapse Biomedical and carries a price tag of about $35,000.

The approval means that Canadians with quadriplegia, whose level of injury prevents them from breathing unassist-ed, can access at no cost a high-tech alternative to the cumbersome ventilator. Previously, the DPS was only available to clinical trial participants or through an arduous procedure to get special permis-sion through Health Canada’s Medical Devices Special Access Program.

The approval is the outcome of years of clinical research that began in 2007 when the Rick Hansen Foundation funded the DPS procedure for a young Vancouver man. That surgery was per-formed in Cleveland, with Vancouver thoracic surgeon Dr. John Yee in attend-ance to learn the procedure. Yee and Dr. Jeremy Road, a respirologist who also works at Vancouver Coastal Health, then launched a Canadian site for the clinical trial, and performed several DPS pro-cedures in Vancouver over the next few years. The Rick Hansen Foundation pro-vided funds to enable individuals from across Canada to take part in the trial.

In 2010, Yee and Road, in collabora-tion with Synapse Biomedical, submitted their clinical data to Health Canada, and requested the procedure be approved.

Fast forward to 2013. Health Canada had not yet approved the DPS proced-ure, but Lise Belanger, a clinician and spine nurse in Vancouver, was deter-mined to gain access to the system for a

young patient on the acute spine unit at Vancouver General Hospital. Belanger got in touch with Dr. Colleen O’Connell, a New Brunswick surgeon who had recently gone through the process of ap-plying for the DPS for her own patient through the Medical Devices Special Access Program. With O’Connell’s as-sistance, Belanger completed the lengthy application process.

In her application, Belanger re-emphasized the many bene-fits of DPS use—greatly reduced or eliminated ventilator dependence, the ability to taste and smell again, and minimized risk of pneumonia. She per-sonally followed-up to ensure that Health Can-ada heard her patient’s story, emphasizing how

this device could dramatically improve his quality of life.

Belanger’s hard work paid off late last year, when Health Canada not only ap-proved the device for her patient, but for all Canadians across Canada with SCI who are ventilator-dependent and lack voluntary control of their diaphragms.

With this approval, hospitals can now stock the device, which means that there is no cost to the patient.

“I was delighted,” says Road, who, along with Yee, pioneered the technique in Canada. “We had a lot of experience with the system, and the Health Canada application had been in for some time.

There isn’t a large need for this, but for the people who do fit the criter-ia, it certainly is a bonus to them.”

Road has seen the impact the system can have firsthand. “I think

it gives people a lot more mobility. The taste of food is improved. The humidification of the air is improved by taking air in through the nose. I also think people have a better feel-ing about themselves, not being on the ventilator, and feeling more free and breathing more normally. I think overall it’s been very successful.”

If you think you might be a can-didate to receive the NeuRx DPS, the first step is to speak with your physiatrist or respirologist. n

About NeuRx DPSNeuRx DPS is implanted through minimally invasive laparoscopic surgery and provides

electrical stimulation of the muscles of the diaphragm. A patient’s diaphragm is first tested

to ensure it can respond to stimulation.

A surgeon then opens small holes in the abdomen and inserts a laparoscope so the dia-

phragm muscle can be seen. The surgeon then places small electrodes in the diaphragm.

The electrodes are then attached to a small external battery-powered pulse generator,

which stimulates the diaphragm, causing a contraction of muscle.

This allows air to fill the upper and lower parts of the lungs rather than forcing air in

with a mechanical ventilator. The stimulation is then used to condition the diaphragm,

enabling the patient to breathe longer without the need of a ventilator.

The device is controlled through a four-channel, battery-powered external pulse gen-

erator and eliminates the need for a source of electricity and concern for power outages.

In the US clinical trial, more than 50% of the eligible participants were able to com-

pletely eliminate their need for mechanical ventilation. The device was approved by the

FDA in June 2008. For more information on the NeuRx DPS, visit the Synapse website

at www.synapsebiomedical.com.

Page 31: The Spin: Spring 2014

SPRING 2014 THE SPIN 31

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